NIH Attitudes Affect Policy: A Story In Two Parts

The current situation for ME research at NIH is still a problem, despite the fact that the RFAs will increase spending on ME by a significant percentage. I say this based on two things: what the ME field needs to catalyze research and how NIH attitudes about ME are interfering with that. There is a toxic stereotype in play: that people with ME are responsible for the current situation. I believe that as long as that stereotype is held by people in positions of power, we face a slow and uphill battle to obtain the research funding that is so desperately needed.

Part One: You Have Disappointed Me

In November 2016, Carol Head and Dr. Zaher Nahle of the Solve ME/CFS Initiative secured a brief meeting with NIH Director Dr. Francis Collins. They reported that it was a positive discussion, but emails I obtained through a Freedom of Information Act request reveal NIH’s intention to manipulate the encounter.

This meeting with Dr. Collins occurred in the immediate aftermath of Dr. Edward Shorter’s controversial talk at NIH. The ME/CFS community had expressed outrage after learning that NIH had invited Dr. Shorter, because he espouses the disproven psychosocial theory of ME and demeaning views of people with the disease. The talk proceeded over our objections, and all sides were still smarting from the controversy when SMCI met with Dr. Collins.

The emails show that Dr. Koroshetz, Director of the NINDS and Chair of the Trans-NIH ME/CFS Working Group, was angry about the controversy. In responding to Dr. Collins’s request for updated information on the RFA and intramural study, Dr. Koroshetz wrote:

I was pretty upset with Solve ME/CFS for making such a huge fuss over the seminar at NIH by the historian from Canada. If you can impress upon Carol and Zaher the importance of Solve ME/CFS joining with the research effort and not inciting mistrust at every twist and turn that would be helpful. Mainly I am worried that researchers will shy away from studying ME/CFS if they are subject to one attack after another due to the strong biases that are out there. Funding could be for naught.

This email blew my mind because it is loaded with . . . I was going to say inaccuracies, but that is too mild a term. First of all, SMCI did not “incite mistrust.” NIH did that all by themselves when they extended the invitation to Dr. Shorter and then offered only a vague not-quite-an-apology. Second, Koroshetz is perpetuating the myth that no one will want to study ME if they are “attacked.” I guess that’s why no one studies autism or HIV/AIDS, because those activists are pretty rowdy. And the “strong biases that are out there are best described as PACE-Gate and the psychosocial theory of ME. Perhaps Dr. Koroshetz and others should be more concerned about the biases and attacks directed at people with ME, instead of biases held by people with ME.

Dr. Collins did not immediately buy Koroshetz’s take on the controversy. He responded:

Walter and Vicki, did Solve ME/CFS specifically stir up trouble for Dr. Shorter? I got a bunch of e-mails about this from ME/CFS advocates, but didn’t see Solve ME/CFS fingerprints on there. I certainly agree that this kind of behavior is counterproductive to the collaborative effort we are trying to create.

When other disease groups protest disproven, antiquated and misogynist views that interfere with scientific research, how is that perceived? Are they “stirring up trouble”? Are they being “counterproductive”? As I said last November, it is unthinkable that NIH would offer a platform to someone who spoke about people with HIV/AIDS the way Shorter talks about people with ME. Yet NIH seems to think that we are the problem, and if no one wants to research our disease then we just have ourselves to blame.

In response to Dr. Collins’s question, Dr. Vicky Whittemore forwarded him (without comment) SMCI’s November 7th email asking advocates to denounce the Shorter invitation. That email actually asked advocates to contact members of Congress, by the way, not NIH. Advocates had started emailing NIH on November 3rd. But Dr. Collins replies:

Got it. I will express our disappointment to the Solve ME/CFS leadership.

This email discussion between Collins and Koroshetz repeats multiple familiar talking points: ME activists should not have made a “huge fuss,” and now scientists will “shy away” from studying this disease because of “one attack after another due to the strong biases that are out there.” And therefore: “Funding could be for naught.” I know I am not the only person who is sick of this stereotype, but let’s review:

  1. It is appropriate to protest NIH’s invitation of a speaker whose views are not grounded in science, and who demeaned and denigrated both people with ME and the National Academy of Medicine.
  2. Researchers are not subject to “one attack after another.” This is a myth that has been grossly exaggerated and disproven on prior occasions.
  3. The “strong biases” that have been “counterproductive” are the outdated, disproven, and belittling views held by Dr. Shorter and other adherents to the psychosocial theory of ME/CFS.
  4. Research funding is not “for naught” unless that funding is wasted on previously disproven hypotheses.
  5. People with ME are not responsible for the lack of interest in ME research.  The blame lies with CDC for focusing on the symptom of chronic fatigue, instead of the disease of ME, and contributing to the false but dominant psychosocial narrative. The blame lies with NIH for refusing to take the steps necessary to attract and fund research for many years.

A circle with a sad face and the caption “Blame token; it’s your fault.”

I’ll speak up for the people in the back: THIS IS NOT OUR FAULT. But according to Drs. Koroshetz and Collins, it is. Thus, Dr. Collins promised to express NIH’s disappointment to SMCI.

I have a great deal of respect for Dr. Collins, but I am not sorry if I (or ME advocates) disappoint him. I am much more concerned about the disappointment that I and other people with ME must face each day that we have to live without appropriate diagnosis, care and treatment. I am more concerned about the disappointment of the ME research community that NIH will fund only two or three research centers, despite all the data that point to the need for much, much more. So if Dr. Collins or Dr. Koroshetz are disappointed by the way that people with ME are fighting for their lives, I can live with that.

But the problem is not whether Dr. Collins is disappointed in me, or anyone else. The problem is that real harm is caused by perpetuating the lie that people with ME are to blame for the sins of CDC and NIH.

Part Two: Bad Advocate, No Cookie

ME social media lit up earlier this month when Dr. Koroshetz said (on video) that ME research funding needed to be ten or twenty times its current level. That is a stunning admission from the Director of the National Institute of Neurological Diseases and Stroke, but the full context of his comments show the harm of blaming people with ME.

Dr. Koroshetz made these comments during his June 9, 2017 presentation to the Advisory Council for the NIH Director (beginning at 2:25:00 in this video). He began by describing NINDS’s efforts on ME/CFS, specifically the intramural study and the RFA for research centers. Dr. Ian Lipkin, who sits on the Advisory Council, said he was “not as excited about the investment in ME/CFS” because the center grants come down to about $800,000 per year in direct costs for research.

Dr. Koroshetz responded:

I think the goal was that this was not the solution but the seed to grow the research that could then come in through regular mechanisms or else to kind of add on centers so we can kind of move the field across. I think we could find three, three or four centers, that’s not gonna do it. We need probably twenty across the country.

A calculator reading “Not Enough” sits on a pile of money.

Understand what Dr. Koroshetz is saying here. He admits we need twenty centers, but that he’s only investing in the “seed to grow the research.” To Dr. Koroshetz and others, this seems like a reasonable strategy. The field is small and could not create twenty centers this year (although it could probably create ten). So by investing a smaller amount, NIH plants seeds that years down the line could grow into twenty centers.

The problem is that the reason the field is so small is because there has been no money in it for more than thirty years. The field is small because of the strong biases against people with ME and the researchers who work on it. NIH helped create this situation through grossly inadequate funding and past grant review panels comprised of non-ME experts. Now that it admits the need, NIH should be thinking creatively on how to solve this problem quickly. At the current pace, it will be decades before this poorly funded “seed” will produce fruit.

Dr. Lipkin then raised the issue of the small amount of funding offered by the RFA collaborative center grant:

Dr. Lipkin: But $800,000 for a center [after administrative and collaborative costs] is – it’s a challenge. . . . it’s far less than a R-01 for each of the investigators. I just – it’s a problem.

Dr. Koroshetz: No one ever comes to me and said they gave me too much money. (laughs) But I think you’re right, we’ve gotta move this field it’s gonna take a lot of money. The budget’s gonna have to be ten or twenty times what it is now.

This is a remarkable statement. I don’t think we have ever heard such a public and specific admission by NIH that their ME funding is falling so far short of what is needed. From the context of his statements, it appears Dr. Koroshetz means ten to twenty times the present RFA budget of $6 million per year. That translates to $60 to 120 million per year, at least. While still far from commensurate with disease burden, that level of funding would certainly support robust research into pathogenesis and treatments.

The salient point is not, “Hurray, Dr. Koroshetz admits we need $120 million a year.” The takeaway message for people with ME is, “Dr. Koroshetz admits NIH needs to do 20 times better, but nothing is changing.” I’m trying to think of another context where a leader would say we’re falling twenty times short and then do nothing to try to make up the gap. If a company needs to increase its sales by ten or twenty times, you can bet they do something. If a government had a budget shortfall of that magnitude, you can bet they would raise taxes at the speed of light. And remember that Dr. Koroshetz – who is Chair of the Trans-NIH ME/CFS Working Group – chose to kick in only $2 million per year for the RFAs. This low investment from the Chair was not going to be exceeded by any other Institute, thus guaranteeing the smallness of the RFA.

I’m certain that Dr. Koroshetz and Dr. Collins believe they are taking action. But they are taking action that is grossly insufficient for the public health crisis of ME. Dr. Koroshetz said the effort was to “bring new people in, start research going, and hopefully then populate out further to allow folks to submit really high-quality grants to NIH”. This takes time. And we do not have the time. We have hundreds of thousands of Americans who remain confined to their homes and beds for years without end.

In his presentation to the Advisory Council, Dr. Koroshetz also commented on the ME community. He said NIH is:

trying to work with the community which feels terribly ignored and quite angry over this over the last decades but I think we’re making definite inroads there and getting the trust re-built.

A comic book image of a man and woman. The word “lies” is repeated between them.

And here we go again: We’re angry. Just like we make a “huge fuss” and “stir up trouble,” which is “counterproductive.” We are the problem, according to this view.

I reject that view completely and wholeheartedly. People with ME are not the problem. The failure of the research and medical enterprise to take care of people with ME is the problem.

As long as people with ME are accused of being angry and counterproductive, of stirring up trouble and chasing away good scientists, then no one else needs to be accountable for the current situation. If there isn’t enough funding, it’s our fault. If there aren’t enough scientists, it’s our fault.

Casting people with ME as angry while simultaneously blaming us for the current situation does more than deflect blame from NIH. It’s a pretty effective manipulation technique. “You’re angry because there is no funding, but there’s no funding because you are angry.” Such circular reasoning is a trap. Asking quietly and nicely does not force change, and demanding change reinforces the stereotype and status quo.

For more than thirty years, NIH has given people with ME every right to be angry. And I can tell you, having read hundreds of emails sent by the public to NIH officials, we are actually restraining our anger quite well. Describing us as angry creates the impression that we are flooding NIH with vitriol. I have previously fact checked that, and the same was true during the Shorter controversy. ME activists might be vocal, but we have nothing on groups like ACT UP or the heroes of ADAPT.

The longer this frame persists, the more it is reinforced. I suspect the frame is so ingrained at NIH that most people don’t even realize they are looking at us through this lens. It is so ingrained that a few strongly worded emails are enough to make Dr. Koroshetz “pretty upset” with us. Every time that happens, it reinforces the frame still more. However honestly Dr. Koroshetz and others believe in their perception of us as angry, however confident they are that we are keeping scientists away from research, this stereotype remains a serious problem.

Why? Because as long as it is our fault, it is not their fault. Because if it is our fault, then the slow strategy makes sense. It takes time to make “inroads” with such a self-destructive community. By gradually dripping money into the bucket, and letting things progress the way they would have if we had started thirty years ago, then no one has to make waves or spend political capital to fix it.

But people with ME have been abandoned. We have been left to fend for ourselves. Damn right, we’re angry. We have to be. It helps us survive, and it has led to change.

Dr. Collins did not simply wake up one morning and decide to do a little more for ME research. NIH’s current commitment was the result of years of advocacy, and calling attention to the state of the science, and demanding an RFA. After the NAM report, and the P2P report, and the Millions Missing protests, and Brian Vastag’s public letter which was retweeted by pretty much every single science reporter in the United States — after all that, NIH decided to invest a little bit more in ME research. An investment that Dr. Koroshetz admits is minuscule compared to what is required.

At the Advisory Council meeting, Dr. Koroshetz gave all the credit to Dr. Collins, saying:

Myalgic Encephalomyelitis and Chronic Fatigue Syndrome is an area that’s really been completely under-investigated across the country, and Francis [Collins] was really courageous and went out there and said that NIH is gonna change that.

Courageous: a word that means “not deterred by danger or pain; brave.” I don’t see how Dr. Collins pushed through pain or even spent much political capital to help us. To me, the people truly brave and undeterred by pain are the people with ME (and their families, friends and allies). I know a mother of two young adult sons with ME; she is brave. I know another mother who has not disclosed her diagnosis to most of her family; she is courageous. The executive with ME who keeps working is undeterred by pain. The woman who withdraws from her doctoral program with just her thesis to complete is brave in the face of that disappointment and loss. The researchers and clinicians who labor on shoestring budgets are not deterred by the potential danger to their careers. I am writing this blog post, undeterred by the pain I am already experiencing and the post-exertion crash that will follow. The advocates who sacrifice their health and privacy to speak on behalf of all of us are courageous.

Dr. Koroshetz said NIH was “getting the trust re-built.” But how much trust can exist if people at NIH think we are fighting for our lives too loudly? How much trust can exist given the way Koroshetz and Collins blamed SMCI for “stirring up trouble”? How much trust can exist if the response to this public health emergency is a strategy that will take years for tangible scientific progress? How much trust can exist when NIH blames us for the poor funding situation, when they are the ones who control the purse strings?

The bottom line: this perception that people with ME are unreasonably angry and wildly attacking researchers feeds the perception that “Funding could be for naught.” And if there is a perceived risk that funding could be useless, no one is going to invest that funding. This perception places the blame and burden of proof on people with ME. If we do not behave in accordance with Drs. Koroshetz and Collins’ expectations, then we will not be rewarded with funding (as if they have ever rewarded any type of our behavior with funding). Bad advocate, no cookie.

This stereotype leads to and justifies NIH’s current strategic and policy approach to ME: risk as little as possible, cautiously drip in a little more funding, and wait patiently for something to change, some day, far down the road.

Are you ok with that?

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , | 45 Comments

CDC Hilarity

image shows a piece of cake with the layers colored like the American flag

Over the years, I have filed many FOIA requests, and I have learned that it can take a long time to get a response. But CDC takes the cake.

In my experience, all the agencies meet the statutory requirement of “responding” within twenty days, but that “response” is almost always a simple acknowledgement of the request. Getting the actual documents can take months, or more. It’s just part of the process. But even in the context of FOIA, CDC is notorious for its slow responses. And this month, I got hilarious proof of that.

Way back in March 2014 – yes, more than three YEARS ago – I filed a FOIA request with CDC for documents showing how much money CDC contributed to the IOM study, and any communications between CDC and the Office on Women’s Health about the study. I filed identical requests with other health agencies, too. Then I waited.

Responses trickled in, anywhere between one and fifteen months after I filed the requests. But for CDC, I waited. And waited.

Then on June 14, 2017, I received a letter from CDC. But it didn’t accompany released documents. Nope. The letter said:

Your FOIA request is currently estimated at $227.50, which exceeds the $100 maximum FOIA processing fees you are willing to pay. Please know that this is the current estimate and fees could increase due to the amount of time it may take to review any responsive records received.

My immediate reaction to this letter looked something like this:

a seal lies on a beach with one flipper in the air and a laughter-like expression on its face

Friends, I have filed more than 50 FOIA requests over the past few years. Some of the responses have been hundreds or even thousands of pages. I have never, not ONCE, been charged money for those responses. The law allows recovery of fees, and the government notifies you if the search will cost more than a threshold amount. Despite the fact that my requests have sometimes involved lengthy searches, I have never been charged a dime.

It’s almost like CDC doesn’t want to disclose documents. If I were trying to discourage people from filing FOIA requests, I would stretch response times out as long as possible and I would charge as much as possible.

Now, as a former litigator, this kind of thing piques my interest. If finding responsive documents is going to cost more than $200, how many documents are there? What if it is a treasure trove? The stubborn lawyer in me says “call that bluff.” When someone tries to make me go away, I’m going to show up louder and harder. That’s what I’m trained to do.

But at this point, the IOM contract has been over for two years. And I would rather spend my money on an effort that is likely to bear fruit for ME patients, like David Tuller’s work on PACE. Besides, CDC should just provide this information to the public. At a bare minimum, Dr. Beth Unger could provide the dollar figure of CDC’s contribution to the IOM contract. In fact, she could do so quite easily at next week’s CFSAC meeting. Why should anyone have to PAY to get this piece of information?

So as much as it pains me to say this, CDC can keep their documents. I’m not going to pay $200+ to the government for documents that will be heavily redacted and potentially not that much use. I just don’t have the dollars, or the energy.

But thanks for the laugh, CDC.

meme of an angry looking koala and the caption you’re hilarious I’m dying of laughter

(Bonus: my favorite laugh video of all time, so you can laugh with me)

UPDATE: 12:31pm, June 22,2017. An anonymous and generous donor has offered to pay the $227.50 processing fee. I have sent CDC a letter accepting the fee, so now we wait for the documents. Who’s laughing now?

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CFSAC: Second Verse, Same as the First

Another CFS Advisory Committee meeting is upon us. The webinar meeting will be held on June 29th and 30th. And as has been the case in the past, the federal approach to the Committee appears lackadaisical. This bare minimum effort is most evident in the failure to fully staff the committee.

As I noted last December, CFSAC currently has only seven of thirteen members. That’s because the terms of Ms. Collier, Dr. Corbin, Dr. Casillas, and Dr. Fletcher all expired in 2016. In addition, the charter renewed in September 2016 added two new spots on the roster. So there are six empty chairs.

But this is actually not the worst case scenario. Dr. Sue Levine, Dr. Dane Cook, and Dr. Gary Kaplan all reached the end of their terms in May 2017, but they have been extended until November 2017. Clearly this was a last ditch effort to maintain the bare minimum quorum (and save face). Without extension of those terms, CFSAC would have been down to only four of thirteen members.

What about new members? There have been two calls for nominations, one in April 2016 and another in October 2016. Back in September, I reported that some nominations were working their way through the system. Why aren’t any of those nominations approved and ready to go? Beats me. Like I said, lackadaisical.

But new developments show it is worse than that. The four nominations received by CFSAC in response to the April 2016 call were Dr. Cindy Bateman, Dr. Nancy Klimas, Dr. Lenny Jason, and Mary Dimmock. I learned this through a FOIA request. But it turns out Dr. Ken Friedman also submitted a nomination last April. After I reported those four names in September, Ken contacted me and provided proof that he had emailed his nomination. But that information was not included in the FOIA response.

We’ve seen information go missing before, so I filed a new request asking for production of whatever HHS had received from Ken, along with any other nominations that may have slipped through the cracks.

I received a phone call from the HHS FOIA office this month. Despite the fact that I provided proof that Ken submitted his nomination by email, and despite the fact that HHS accepts that proof, there is no record anywhere of his nomination. The FOIA Officer told me that an extensive search was made, including the involvement of IT personnel, but no record of the email exists on government servers. And no explanation could be offered.

The FOIA Officer also told me that to remedy the situation, Ken would be invited by telephone to resubmit his nomination. But when I checked with Ken . . . . you guessed it. He had not received the phone call (he has since resubmitted his nomination anyway).

In a move that can only be described as placating, the FOIA Officer also told me that the nomination process was being changed. From now on, nominees will be told to contact the office if they do not receive confirmation within 24 hours of sending nominations. If they do not receive that confirmation, they will be given another person’s email address for their submissions, with confirmation to follow.

This “improved” process does not make up for the erasure of Ken’s nomination, nor does it guarantee that future nominations won’t digitally vaporize.

And the real question is: why is it taking more than a year to appoint new members to the committee? CFSAC cannot function with only half a roster. Sure, the committee has a quorum but that’s it. Working groups are hamstrung by a lack of committee members, as is the work of formulating and approving recommendations.

So why are we in this situation? Why do we have only half a committee, while nominations are lost or languish in the approval process? Because business as usual for the federal management of CFSAC is like a sloth working at the DMV:

via GIPHY

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Guest Post: Sickaversary

My friend, Jenny R, wrote these profound words about her sickaversary.

10 years and 4 days ago today I got sick and never got better. I wrote this to commemorate it:

I want to write something incredibly profound and moving for my 10 year sickaversary. But I can’t. Writing used to be my outlet. It was something that came easily for me and I was proud of my talent with words. Business school beat my affinity for flowery and often turgid prose out of me in favor of conciseness and bullet points. But even so I still retained a nugget of my craft and found ways to enjoy penning a tax research paper in place of angsty poetry.

I could say that it happened the second the virus entered my bloodstream. That a microbe found and destroyed my skill in a summary execution. And in some ways that is true. But it was a slower and (at times) more devastating death. The virus/CFS hijacked my focus and memory immediately. A year later migraines and their medications took and continue to take my words (a condition called aphasia). Then for good measure they took my ability to type or write without angering the ruthless dragon that is the permamigraine (occipital/trigeminal neuralgia). More recently nerve compression from herniated cervical discs and stenosis keep my hands from working properly. But even without these numerous, concrete medical issues, the fact is that I lost faith in my mind a long time ago. That kind of self doubt is as debilitating as my motor deficits.

Because no matter what happened in my life – whether I was single or attached, fat or thin, rich or poor, happy or sad – I had my intellect. Twenty years ago when I graduated from high school I was awarded Most Likely to Run for President and bound for one of the best business schools in the country. I knew I was smart and I felt like because of it endless possibilities awaited me. I was told all my life if I studied hard that everything would work out. Above is a picture of me at 18. Her innocence and joy are hard to look at because I know she would be heartbroken if she knew how it all worked out. That the girl who wanted to major in literature struggles to focus on a young adult audiobook now. That the former CPA who used to run audits can hardly balance her checking account anymore.

This is usually the time where I start to worry I’m alienating people with the harsh truth of living life with a debilitating illness. The part where I list the joys that are still plentiful in my life. The part where I feel pressure to say that I’m grateful for getting sick because it made me see beauty where I once did not. That now I know what really matters in life. So it’s all good.

But I won’t do that this year. It’s been 10 fucking years. I have every right to be angry that I’ve spent 10 years in bed. That I watch my friends and family travel, get married, have kids, excel in their careers, and move forward in life. I feel stuck. Trapped in amber. Preserved at the age of 27 except with more lines on my face, gray hairs, and a crappier metabolism.

Of course I know it could be worse. I am friends with people much sicker than I am. I have friends who have died. I’m a white girl in America with parents who can afford to help her. My privilege abounds. But because of the plentiful cheery disabled person tropes, people’s discomfort with their own mortality and the pain of others, our positive attitude focused culture, and the ingrained socialization women receive to be pleasant and meek, I have subjugated my own grief time and again over these last 10 years. So for today I’m sharing it with you. I’ll resume regularly scheduled Stepford programming tomorrow.

But I’d be remiss to say that my life of perpetual pain, fatigue, and loss is devoid of love and joy. It’s so not. I’ve got a kick ass boyfriend who genuinely enjoys taking care of me instead of doing it out of obligation, friends who never give up on me even when I disappear down a migraine hole for months, a niece and nephew that don’t see a sick person just their purple-haired Aunt Jenny, parents who let me and my cats move in and disrupt their swinging Empty Nest life without hesitation, a little sister who in many ways has become my big sister by taking care of me whether than means pedicures or help with errands, a Bestie/Braintwin who knows Jensen Ackles and the cuddles from Corgis can cure anything, my late babycat Cameron who was always up for spooning and never stopped trying to groom me, and a wee tortie Callie who is perfectly happy to spend her days in bed with me. These people love this Jenny. Even if she is broken.

I want to sum this up with some amazing wisdom I have gleaned from these last 10 years but all I can say is that it really sucks to watch everything you thought made you…well…you disappear into a fog of fatigue and relentless pain. It is devastating to watch what you hoped for the future, in my case a life of professional success, exciting travel with a loving husband, and maybe even a kiddo or two, disappear down the drain. The grief never really ends – it just ebbs and flows.

But it doesn’t mean I don’t have hope, gratitude, joy, love, and even excitement in my life. Doctors have found consistent, biological differences in CFS patients and the questionable studies that relegated it as a somatic disorder that only psychotherapy and exercise could cure are being disproven. I’m going to see the Old 97s play next month and am hoping for a trip to Colorado at the end of the summer to explore canniboid oil for pain relief.

So my great wisdom is that I don’t have to pigeonhole myself as the smiling disabled person who puts everyone at ease and is full of folksy wisdom. But I also don’t have to live solely in my pain, day in and day out. I can be grateful and grieving at the same time. I can look forward to tomorrow while being sad for that hopeful 18 year old girl that didn’t expect this future. To quote the 11th Doctor, “The way I see it, every life is a pile of good things and bad things. The good things don’t always soften the bad things, but vice versa, the bad things don’t always spoil the good things and make them unimportant.” Or better yet, to quote the TARDIS, “[Human beings are] so much bigger on the inside.”

Posted in Occupying | Tagged , , , , , , , , | 6 Comments

PACE-Gate: Continue Tuller’s Work

Journalist David Tuller is well-known to the ME community. His series Trial By Error on Virology blog launched PACE-Gate into the scientific mainstream. Since that series began, Tuller has also written about the devastating effects of PACE-style “treatments,” garnered support from academic colleagues for independent investigation of PACE, and participated in reanalysis of PACE data. Tuller’s contributions to ME science were recognized in 2016 with awards from both the IACFS/ME and the Tymes Trust.

Now David Tuller needs your help.

Tuller has been able to do all this PACE-Gate work on his own initiative because he has also had an academic position at the University of California, Berkeley. But budget cuts at Berkeley will terminate Tuller’s position on June 30, 2017. Yesterday, Tuller launched a crowdfunding campaign for $60,000 to support his work.

The money will allow Tuller to spend the same amount of time on PACE that he has done to date – about half-time. He will continue to investigate PACE-related issues, and publish on Virology Blog and possibly other publications. Funding will also give him the flexibility to pursue other activities like more open letters, travel, and whatever else is needed. But he says:

I want to be clear that I will continue this effort no matter what I receive through this five-week crowdfunding campaign, which ends June 30th. The question is how much time I will be able to devote to it.

Why crowdfunding? Tuller can’t work for free (nor should he have to). He is committing to another year of this work, but obviously needs to earn a living. Crowdfunding will help him move forward knowing that the PACE work is supported. He chose a one-time campaign through Crowdrise instead of something like Patreon because he did not want to make an open ended commitment. Many crowdfunding platforms allow the exchange of contributions for rewards, but in this case the work itself is the reward (for all of us).

Contributions are tax deductible through the support of the Center for Scientific Integrity (home of Retraction Watch), which will pass the funds on to Berkeley. There are fees that take nibbles along the way (8% by Crowdrise, credit card fees by the Center, and 4 or 5% by Berkeley). Those interested in making large gifts should contact Tuller directly (davetuller@berkeley.edu).

Science is supposed to be self-correcting. Why haven’t we seen the scale of investigation and retractions that we saw with XMRV? Simple: the stakes are not as high to those outside the ME community. The XMRV study published in Science in 2009 purported to show that 3% of healthy people were infected. That represented a threat to the nation’s blood supply, and the scientific enterprise responded appropriately. NIH invested $1 million to replicate the study, and retractions began even before those results were published.

But the only people being directly harmed by PACE-style “treatments” are ME patients. Furthermore, those harms are counter-intuitive to most people. After all, who could be hurt by a little more exercise? Science can only be self-correcting through replication and scientific integrity, and those require funding and attention.

It was ME advocates who recognized the deeply flawed science of the PACE trial, and worked for years to bring attention to it. We provided the foundation for Tuller to take that work to a different scientific audience and turn up the heat on the journals who have published that flawed science. Now the ME community (and hopefully our allies) needs to step up again and provide Tuller with the financial foundation he needs to extend that work further.
*Edited to clarify Tuller’s position at Berkeley

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Book Review: Through the Shadowlands

Julie Rehmeyer is a science writer and person with ME who has written extensively about research and controversies like the PACE trial. But today, she publishes Through the Shadowlands, a book about her personal journey through ME and back to life.

I have read this book from two perspectives. First, I had the opportunity to read Julie’s early drafts and provide feedback as her friend. But before publication, I was able to read the final version from start to finish with the perspective of a reviewer, and I offer my comments here.

The first thing to know about this book is that Julie can write. She tells her story with honesty and clarity, and the narrative tugs the reader along her winding path from childhood through illness and on to the other side. Julie can explain facts and details so clearly, and then write passages like, “The straw of my house gleamed golden against the brown patches of mud plaster, as if the house were the love child of the sun and the earth.” The experience of reading this book is a pleasure.

Julie’s story of getting sick, and how her life began to shrink, will feel very familiar to people with ME. She describes knowing, “Something is really, really wrong with me.” We’ve all had that moment – before diagnosis, perhaps even before seeking medical care. Each of us has that point of recognition that our bodies have shifted out of health in a serious and fundamental way. And Julie entered the same labyrinth that so many of us did: the trips to different doctors, the suggestion or diagnosis of a psychological problem, the lack of scientifically established treatments. She faced victim blaming, where someone insists that if the suggested treatment didn’t work then she must not be trying hard enough, or must not want to get well. We’ve all been there.

But Julie isn’t just talking to ME patients with this book. In fact, I think she is talking primarily to people not familiar with ME. That audience will feel, along with Julie, what this is like. She writes, “I tried to explain that running off after every quack treatment my friends pushed on me just made me feel desperate and hopeless. The reality was that nobody knew what to do about this fucking disease — if they did, I would have heard about it by then.” I wish I could have been so clear with the dozens upon dozens of people who have tried to push answers on me over the years.

Despite choosing to accept her reality, Julie does not stop looking for answers and rejecting ideas that do not make sense to her. Supplements are a way to part the “gullible” from their money. She found people who wore magnets in their underwear or relied on homeopathy or wore devices that zapped electricity through the wrist. But other ideas do not sound so strange to her, like a shamanic journey or mold avoidance or consulting a psychic.

And this will be one of the challenging parts of Julie’s story for people to accept. Realizing that science was not going to provide her with answers, she decided to try a “Hail Mary pass” and test whether mold was making her sick. She chose mold based on her intuition. For some reason she cannot articulate, trying mold avoidance felt right when magnets and supplements sounded wrong.

After spending two weeks in the desert, Julie finds that she does react immediately and strongly to mold (or something else in the environment). And showers bring near instant relief from the worst of the symptoms. Over and over, she experiences sudden, crippling attacks and is restored by showers or other decontamination methods. Julie deftly explains the science behind mold reactivity (while noting that so much more science is needed), and theories for why her reaction could be so severe and resolve so dramatically. There is no proof beyond her self-experimentation, but there can be no denying that this is true for her.

Julie’s mold avoidance actually increases her sensitivity, and the severity of her reactions. There are a number of frightening episodes, but she clings to the fullness of life as she navigates through them. Despite her illness, Julie resumes her career, meets a new man, and travels internationally. I think she shows extraordinary courage, living her life and trusting that she will be able to handle whatever the illness throws at her.

One of the remarkable things about Julie’s story is the way she balances seemingly inconsistent points of view. She tackles mold avoidance scientifically, but also holds herself open to emotional and spiritual approaches. She is constantly questioning herself and her interpretations of her experiences. Julie is willing to try things, even if they sound a little wacky, and then thoughtfully integrate what she learns. This is an extraordinarily difficult thing to do, and even more difficult to explain well. Julie does both. Through experimentation, Julie is able to reduce her reactivity to mold and regain much functionality. She is not cured, but she is much improved.

Mold avoidance is controversial, both inside and outside the ME community. And Julie is clear that, “My experience obviously does not establish that ME/CFS as a whole is caused by mold or related contaminants, and I strongly doubt that’s true. Accurately assessing how many ME/CFS patients are affected by mold is impossible at this point.” Julie is simultaneously adamant that there is a scientific basis to mold sensitivity, and that much more science and funding is needed to find answers for all ME patients.

Through the Shadowlands speaks an important truth to the world. Julie tells the truth about what it is like to live with ME in ways that patients will identify with and that outsiders will understand. She makes the case for why current medical care and PACE-like models are atrociously bad. And Julie’s determination to seize life to her fullest ability is an example of courage to everyone.

My favorite parts of Through the Shadowlands are the passages where Julie describes her connection to the earth. I have always felt a deep well of connection to nature, and I recognize the same in Julie’s description of her time in Death Valley:

I felt myself expand into this great space, this emptiness. Despite the wind’s immense swirl of energy, the land felt, quiet, still, impassive. Everything fell away from me — my body, my pain and exhaustion, my fear, my strange experiment — and was replaced with a huge and ancient stillness. All the time, I thought, this place was here, whether I was pinned to my bed or bounding up a mountain trail. As I poured out into the valley, I felt the valley pouring into me, its enormous spaciousness filling my chest.

Through the Shadowlands is an honest and moving account of what it is like to have ME, and to live a real life with it. In my opinion, both the ME community and those who have never heard of us can learn something from Julie’s story.

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Book Review: Growing Gills

I usually focus my book reviews on titles that are directly related to ME, but I’m making an exception today because I want to tell you about Growing Gills by Jessica Abel. This book is about creativity, not disease, but it is having a profound impact on how I live with ME.

I first encountered Jessica last year, through serendipity and a series of Twitter links. I took her Creative Focus Workshop because I wanted to figure out how I could write the book that I’ve been lugging around in my brain for a few years. The Workshop helped me focus, I set a daily word count goal, and I was off and running typing.

Until I did what I always do: I pushed too hard, and I got involved in new advocacy work, and my daily word count dropped to zero. I lost all my momentum, and proceeded to berate myself about it for months.

But here’s the thing: the book in my brain won’t go away. I have been in a vicious cycle of setting goals, failing to meet them, feeling like a jerk, ad infinitum. So when Jessica offered a reboot of her Workshop in preparation for her book release, I jumped on it.

And this time through, I actually understood what Jessica has been saying all along:

The secret to getting past your resistance is not about getting tough and forcing yourself through. The secret lies in divining root causes, taking them apart, and building support systems to buttress you against the specific issues you face.

I’m really good at the “getting tough and forcing yourself through,” which means I am also really good at exacerbating my symptoms and making myself sicker. Growing Gills finally finally finally got through my thick head that this is not the way to productivity.

Jessica’s view is that it doesn’t matter what circumstances are limiting your creative work. It’s not about finding more time, because everybody has limited time. It’s not about fear or stress or money, because everybody has issues with these things. The Growing Gills method helps you build a structure that will work for you. This book walks you through thinking about all your creative ideas, choosing one to focus on, and then setting up a schedule and system that will help you make significant progress in whatever time you have.

Growing Gills did raise my hackles in one way, and it was the key to finally understanding it. Jessica sees all personal circumstances as presenting the same kind of challenge, whether it’s a job, kids, or a disability. And this, to be honest, pissed me off. “ME is different,” I cried. “I’m disabled and I can’t get around that! It’s this big unmovable obstacle! How can I possibly write my book?”  It took me awhile to figure out why I had such a strong reaction.

Let’s say someone can only work on her creative project for an hour because of the demands of her job or because of time with her kids. After the creative hour, she does her job or takes care of the kids, and hopefully finds fulfillment in those activities. After my creative hour, I’m done. I don’t get to do some other productive/fulfilling thing. I’m stuck recovering from and thinking about that creative hour. And I’m also stuck with the consequences of choosing that creative hour over basic things like paying bills or cooking a meal. If I have to choose between writing for an hour or cooking a simple dinner, how the hell am I supposed to make that choice and be satisfied with it?

My challenge is not actually time because I have tons of time – way more open time than most people. It’s the energy and capacity that I have in such limited supply. A good analogy might be the parent of a newborn – does that parent snatch a nap between feedings, or spend that time creating art and suffering the extra sleep deprivation? The difference is I don’t have a sweet baby; I have a slavering monster determined to destroy my body.

All this sounds like I am justifying my defensive reaction to the idea that we all face the same trade offs and choices in our creative time. But this time through Jessica’s workshop and reading Growing Gills, I saw it differently.

Yes, I have a huge unwelcome restriction on my time and energy, and I did not choose that restriction. And yet. . . . I do make choices in what to do. I made a choice to get involved in advocacy, and write this blog, and take cello lessons. I make choices about “productivity” and “busy work” and how I spend my energy. Even in the way I deal with recovery time, I can choose to bang my head against the Wall of Nope, or I can choose to sit quietly for a bit and wait for it to fade.

Growing Gills is teaching me that the problem is not that I only have an hour for creative work. It is teaching me that I have to make choices in order to make the hour possible, and sometimes the choice will be to sacrifice that hour for a healthy dinner or a phone call with a friend. It is also teaching me to treat recovery time with the same respect as creative time: it needs to be planned for and then enjoyed without guilt.

Like I said, I truly excel at “getting tough and forcing yourself through.” It is partly how I have achieved what I have so far. But I am trying a new way, now. I’m trying to make choices based on a realistic assessment of my capacity. I’m trying to recognize when a barrier is actually the result of a choice. And I’m trying to be compassionate towards myself around my choices and the circumstances that are beyond my control. As Jessica writes, “Giving yourself crap over not working is how you dispel your creative energy. It’s literally counterproductive.”

If you have creative work but have been unable to make it happen, I highly recommend Growing Gills. It is practical and down to earth, and it is realistic. Whether you are blocked by illness, disability, job, money, fear, or family, this book will help you take an honest look at where you are, where you want to be, and chart a path between the two.

And if you need inspiration? If you need to know it is possible to have ME and still express your creativity? Look no further than BedFest 2017, a virtual concert by people with ME.

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#MillionsMissing 2017

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Preconditions, Burdens and Ableism

Who are we, as people with ME? Are we “patients”? Are we defined by the disease and its impact on our lives? Which comes first: me or ME? This is a question of identity, and how language can bestow or limit it.

Identity is on my mind in the wake of the House of Representatives’ passage of the American Health Care Act. (Here’s a summary of why this bill is so bad for people with disabilities.) Under current US law, insurers cannot refuse coverage if you have a pre-existing condition, and they can’t jack up your premiums for it either.

But under the bill passed last week, more than 130 million non-elderly Americans with pre-existing conditions will lose the protections they have today. Within hours of the vote, Twitter and Facebook were flooded by posts with the hashtag: #IAmAPreexistingCondition. Even celebrities chimed in.

The hashtag is powerful, because it attempts to put faces to all the health problems that we have. Denying health care for pre-existing conditions is denying health care to people. But I will not say: “I am the pre-existing conditions of ME, POTS, and thyroid disease.” I have those conditions, but my health problems are not my identity.

We have to be careful and precise in choosing language. Why? Because changing one word can change the meaning of a sentence, or a protest. I am have a pre-existing condition means I am a person with a complex identity. I am whole and complete, and my disease has not reduced me to just my need for health care. We are not a list of medical words.

We’re all prone to make mistakes with language at times, including ME allies. In describing people with ME, Llewellyn King recently wrote:

They are living a life that is a nearly intolerable to themselves and a massive burden to their loved ones, spouses, parents and caregivers. . . [ME] is vicious and debilitating, leaving the patient confined to a marginal life, a parallel and unequal existence.

I reject this description. I understand that King was trying to convey the devastating suffering of people with ME to a non-ME audience. But that quote makes me nauseous. My life is not a massive burden to my family, and my life is not marginal.

I have ME, and I am disabled. These facts do not make me less of a person. I can’t do all the things a healthy person can, but that does not make me a burden. I can’t participate in life the way I used to, but that doesn’t make my life less worth living.

Describing people as burdens, as marginal, as a list of conditions – this is ableism. Intentional or not, this language communicates that our illnesses make us less than. It reduces our identities to the diseases we have, rather than the people we are. And it tells us that a life with a disease or injury is not as valuable and worthy as a life unaffected by disease or injury. It’s reminiscent of the controversy over the film Me Before You, which romanticized the main character’s choice to kill himself because he is quadriplegic, despite his admission that he could still have a good life.

The intersection of disease and identity shifted with The Denver Principles. These principles, created by a group of AIDS activists in 1983, changed health care and how people with diseases perceive themselves. The Principles begin with a declaration:

We condemn attempts to label us as “victims,” a term that implies defeat, and we are only occasionally “patients,” a term which implies passivity, helplessness, and dependence upon the care of others. We are “People with AIDS.”

That declaration is true for everyone with a disease. We are people with a disease or a pre-existing condition or a disability. Terri Wilder taught me this when she said:

I’m not a patient 24/7 days a week. I’m a sister, friend, and daughter. I’m a person first and should be referred to as such. Using person first language is respectful and acknowledges that while ME is a part of my identity I’m not an illness and am only occasionally a patient in a medical provider’s office.

So let’s stop saying “I Am A Pre-existing Condition.” Let’s reject descriptions of ourselves that reinforce the stereotype that we are burdens, that we are marginal, that we don’t matter, that we are not people.

Because I am a person. I am a person with ME, and I deserve the same respect and consideration as everyone else. ME is a part of me, but it is not my identity. Me comes before ME.

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The Halfway Point

We are halfway through fiscal year 2017. How much money has NIH spent on ME/CFS research so far this year, and where will we end up? The short version is: based on current spending, we are unlikely to hit the $15 million that people were hoping for. Hang on, because it’s a bit twisty turny.

To date, NIH has spent $2,861,839 on ME/CFS research in 2017.

That sounds terrible. But let’s dig into that number. So far, NIH has disbursed funding for the following eight grants:

However, there are six additional active grants that have not received money yet this year. I looked at the project start and end date, and when funding was issued in FY 2016. Based on that, I think these six grants are still due for money this year:

If those grants get the same amount of money this year as they did in FY 2016, then we can expect a further $2,202,000, bringing the 2017 total to $5,063,839.

image credit: http://jessebharris.com/

This is a problem. Why? Because this would be a 33% decrease from NIH funding in 2016 ($7,637, 591). In fact, it would be the lowest funding number since 2012.

There’s another problem buried in these data. Last year, NIH funded five new projects. This year, only one new project has been funded. New grants would help salvage the funding total from the basement, but will there be new grants?

There are the RFAs to look forward to. The Collaborative Research Center and Data Management Center RFAs should total $6,750,000 this year. Competition is going to be fierce, and it is inevitable that some applying groups will be disappointed.

But there is a hidden opportunity cost here. I am co-PI for one of the applying groups, and I have watched the effort it takes to put an application together, up close. It is an extraordinary amount of work. I think it is unlikely that any group applying for an RFA grant has also submitted other grant proposals this year. What about after the RFA applications are submitted? I think most researchers will wait for their application reviews (projected to be done in August) before writing new applications, because the reviewer feedback can shape new applications.

In other words, while the RFAs offer dedicated funding, there may be a drop in new investigator-initiated grants outside the RFA mechanism. The groups that do not get funded under the RFA will not have new funding in 2017 because they were not able to submit those non-RFA applications.

If this plays out as I have projected, here are the total numbers:

FY 2016 FY 2017 % Change
Regular Grants $7,637,591 $5,063,839 -34%
RFA Awards $0 $6,750,000 promised 100%
Total $7,637,591 $11,813,839 55%

We come out ahead. And the RFAs represent a long term strategy. It’s not just about that influx of $6.75 million this year. It’s about increasing collaboration and data sharing, and spinning off new grants. Hopefully, the $6.75 million to the Research and Data Centers will bring a greater return on investment than if that $6.75 million went into regular investigator-initiated grants.

There is one more speed bump looming on the road ahead: the federal budget. First, there is a (decreasing) chance that the government will shut down this Friday if Congress cannot pass a spending bill. That would bring everything to a screeching halt, including putting together the grant review panels for the RFA applications.

But beyond the shut down, NIH is facing the possibility of deep spending cuts. Nobody knows what is going to happen, and NIH is hedging its bets now. The RFAs include this qualifying language: “Future year amounts will depend on annual appropriations.” In RFAs issued over the last couple weeks, NIH has started saying:

Although the financial plans of NIMH and NINDS provide support for this program, awards pursuant to this funding opportunity are contingent upon the availability of funds. Funding beyond the first year will be contingent upon satisfactory progress during the preceding years and availability of funds.

It’s not over yet.

Note: I edited the first paragraph a couple hours after publishing in order to clarify where we can expect to end up by the end of the year.

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